Grand Forks schools see rise of children with autism

Anthony Kuznia was just like any nine-year-old. He was a little unsure of strangers, introducing himself and disclosing his age to a reporter only at the prompting of his grandmother, Janet Luettjohann.

When asked, he said he enjoyed working on the trampolines at Red River Gymnastics in Grand Forks and swimming at the Ramada Inn, where he, his sisters and grandmother had checked in on Thursday to use the pool.

But Anthony soon grew bored. He turned to the concrete fountain in the hotel lobby, walked around it and tapping his fingers repeatedly along its side. At a rack of colorful brochures featuring homes for sale, he chose a few to study and take home.

Luettjohann said Anthony is fascinated by houses. Riding in a car with her, he will note the number of stories on each house they pass. When they look at houses for sale online, he remembers exactly which house has what features. He could spend hours in a furniture store.

Every morning before he leaves for Phoenix Elementary School in Grand Forks, almost without fail, he checks the basement, making sure each door is closed and all the lights are off. It's a routine he insists on keeping.

Anthony has autism, a complex developmental disorder that has a range of effects, including compulsive behavior and difficulty socializing with others, though he has less trouble than other autistics. Better diagnosis and wider screening has led public health officials to conclude that there are more children like Anthony than once thought.

The Centers for Disease Control and Prevention said last week that an estimated one in 88 U.S. children and teens have a disorder on the autism spectrum. That's roughly a million children and teens. The new number means autism is nearly twice as common as officials said it was only five years ago, when they believed the rate was one in 110 children.

The Grand Forks School District, too, has seen a rise in the number of children with autism, with 76 out of 6,823 enrolled students falling into that category, according to Tori Johnson, the district's director of special education. That's about one in 90.

"That number keeps going up," she said.

They may go up some more this year. Altru Health System is setting up a series of free screenings for children 12 and younger. The goal is to identify children with this disorder as soon as possible, to maximize the effectiveness of treatment, according to Diane Gunderson, manager of Altru's Rehab Outpatient Therapy Services.

Early detection

A key issue with early detection is the resistance of parents fearful of what the truth may mean for their children.

"The embarrassing thing is when parents don't want to realize their kid is different," said Bob Concannon, whose son Bobby, now a Central High School student, was diagnosed with Asperger syndrome in kindergarten. Asperger is a disorder that falls within the autism spectrum.

The district deals with parents' resistance by classifying some students as "non-categorical delay," which includes children 10 and younger who struggle in school and may have learning and emotional disabilities. Some may have autism but the condition has not been diagnosed.

"It's a way for us to serve them without identifying them specifically in a certain category," Johnson said.

Bob Concannon said it's been "very challenging" to raise Bobby, but worse when he was young and the family didn't know about Bobby's Asperger. "My son was violent. I can't tell you what it's like to have to physically restrain your child, all the while with tears in your eyes."

"Once you admit it, you're three-fourths of the way there," he said. "Then you must help them develop to the highest level. When you receive the diagnosis, it becomes solid, you can deal with it."

But it doesn't get a whole lot easier.

"It conjures thoughts of, 'What does this really mean?' They feel fear for the future. 'Is my child going to have a happy life?'" said Johnson. The fear is eased somewhat when they learn of things that can help their children, she said, but "it's still a pretty tough pill to swallow."

Dramatic upswing

The CDC study is considered the most comprehensive U.S. investigation of autism prevalence to date.

Researchers checked health and school records from areas in 14 states -- Wisconsin was the only Midwestern state -- looking for 8-year-olds who met the criteria for autism, even if they hadn't been formally diagnosed. Then the researchers calculated how common autism was in each place and overall.

Eight-year-olds were selected because most autism is diagnosed by that age.

In the early 1990s, only a few out of every 10,000 children were diagnosed with the condition, based on some small studies in individual states or cities. But the number began to change dramatically after 2000, when Congress directed federal health officials to do more autism research, and CDC started the larger study to see how common autism is.

In 2002, the CDC estimated one in 150 8-year-olds had an autism-spectrum disorder. In 2006, the rate was one in 110, and now it's one in 88.

Andrea Hastings, autism resource teacher at Lake Agassiz Elementary School, agrees with the CDC that better screening probably accounts for the higher autism rate, but there may be other factors.

"Parents are more aware now," she said. "And I think pediatricians are starting to refer more as well." Doctors are checking for symptoms in infants and school districts are conducting pre-school screenings, she said.

Diagnosis how?

Autism is diagnosed by making judgments about a child's behavior; there are no blood or biologic tests.

For decades the diagnosis was given only to children with severe language and social impairments and unusual, repetitious behaviors. Today, it's accepted that signs of autism can be more subtle.

Kristie OReilly recalled how her daughter Kayla made no eye contact and never engaged in imaginative play as a toddler. Just before her third birthday Kayla was diagnosed with autism.

Usually, if children by the ages of 3 to 5 aren't hitting developmental milestones such as making eye contact, or responding when their names are called, or reacting loud noises, their parents or others will recognize the signs and check for autism, said Altru's Gunderson.

But she stressed the importance of screening at even younger ages, from 18 to 24 months. "If diagnosed early, by the time they get to pre-school or kindergarten, they've had a couple of years of therapy."

"We know socially, financially, emotionally and physically, the earlier the intervention, the better the outcome," she said.

"It's a diagnosis for the family, because your whole life revolves around it," said Kristie OReilly. "We've adapted our lives. We just said, 'Ok, we can do this, we can't do that.'"

And screening for autism is important even if the diagnosis turns out not to be autism, Gunderson said, because there may be something else that should be addressed.

Autism in GF schools

Elementary-school age children with severe autism symptoms attend one of two schools with special classrooms for them in the Grand Forks School District. Lake Agassiz, where Kayla OReilly is enrolled, is one. Phoenix is the other.

These children need more specialized help than their own neighborhood school can provide, such as "sensory" rooms where they can find respite from over-stimulation, said Andrea Hastings, the autism resource teacher at Lake Agassiz.

Most other children with autism attend schools throughout the district, and receive varying levels of support from paraprofessionals. They may also work with speech pathologists, psychologists, music therapists, and adaptive physical education and special education teachers.

Fitting in

Some autistic students do quite well academically; they have no intellectual disability.

"It's the social piece that causes them the most difficulty, especially during the more unstructured time -- lunch, hallways, recess," Hastings said. "That's most difficult for those students."

And social development is key to a normal life after school.

"If you can't get or hold a job, or maintain friendships, your social intellect is impaired," Johnson said. "It is truly is an impairment."

Students' reaction to peers with autism is different at different ages, she said. They do recognize differences, she said, but the vast majority of their peers are helpful, accepting and supportive.

Students with autism have been elected to student councils and participated successfully in sports and the performing arts.

Bobby Concannon, who started a fight with another boy named Bobby in grade school because he thought the boy stole his name, is now student body president at Central.

Getting better

His father is ecstatic about how the school district has handled his Aspergers.

"The care he got here is incredible," Bob Concannon said. "Grand Forks has the best special education in the country -- quite probably the finest in the world."

Kristie OReilly is pleased as well with Kayla's progress seven years since she was diagnosed.

"Some things we're able to overcome, others we work around," she said. "This last year has been phenomenal.... The differences I've seen in her, from when she was little to now, it's amazing."

Luettjohann said Anthony is a fairly outgoing for an autistic child -- when he first meets a person, he'll want to know her name and what she's doing there -- and his grandmother has high hopes for him.

"I personally believe he's going to grow up to be an architect because of his interest in houses and what he's able to do on the computer," she said.

Each child with autism is different, she said. "Every one of them has a special gift to give the world."

Reach Knudson at (701) 780-1107; (800) 477-6572, ext. 107; or send e-mail to pknudson@gfherald.com . The Associated Press contributed to this report.